HELLP syndrome recurrence

Emily - posted on 12/14/2012

I developed HELLP with my first child, and was admitted at 36 1/2 weeks in May of 2011. After 3 days of induction and going in to labor I ended up with a c-section due to continued platelet drops and really high BP. My kidneys were in bad shape too. Our son was born at exactly 37 weeks, 6lbs 3oz and perfect, no NICU time at all. I recovered quickly, but was given a pint of blood to get my platelets up before I was allowed to leave.

Now, I'm almost 27 weeks with my second boy and today I was told it looks like it may be happening again. I have to take my BP twice a day and do those urine strips every morning. If anything changes I have to tell them, and they want to do ultrasounds every three weeks from here on out. I also have to do a 24hour urine on Sun.-Mon. And, of course, we were supposed to leave to visit my husband's family in Germany in another 4 days. We only get to go once a year, usually for Christmas, and my mother in law has not seen our son in person since he was 8 months old. I feel horrible that not only could all this crap be happening again, but that it may have ruined our holiday and theirs too. For something that, I was told, had a 10% chance of recurrence and is pretty rare, this crap seems pretty prevalent.

Caroline - posted on 12/28/2011

Valerie, see your obstetrician and have a referral to someone who is an expert in this area. If you live in Melbourne Australia, I highly recommend Lionel Steinberg. He is a specialist in high risk pregnancies and I wouldn't go anywhere else. Basics are that platelets need iron so have lots if iron rich food and iron tablets. They are important for you and the baby. Have the special pregnancy & breast-feeding multi vitamins too. Make sure you get extra regular check ups. I went every 2 weeks and had my vitals checked. Get urine checks every time to check for protein levels which picks up any kidney issues , a side effect if hypertension. If blood pressure gets high, ask to go in blood pressure tablets. They do not effect the baby, and ensure you stay healthy so you can go full term. Please get a really good obstetrician - it us worth paying for. Good luck.

Valerie - posted on 12/27/2011

Hi there,
I had my first baby february 2011 and started showing signs of mild Pre-E at 30 weeks. It got progressivly worse and then I was diagnose with HELLP syndrome at 33 weeks. I didnt have to deliver till 37 weeks because the doctors didnt think anything was wrong in L&D even though my OB thought there was. My baby at 37 weeks and 3 days was born at only 5 pounds due to Intrauterine growth restriction and he also has a few birth defects (not major though) he is 10 months now and we are currently having to do multiple tests on him to figure out why he will not grow for the past 3 months. I found out 6 weeks ago I am expecting again( was not planned this time) I am currently worried that I will develop it again. My platelets are low but not low to be classified as thrombocytopenia yet. I am only 10 weeks pregnant. I have already been having high heart rates and anemia. I almost died on the table during the Emergency C section because of my thrombocytopenia level was extremely low all the sudden and I almost bleed to death. If anyone could possibly give me any information that would be great to help reduce the worries I have about this pregnancy.

Thank you

Flic - posted on 12/02/2011

I would love to know the answer to this as well as i really dont want to go through it again. My 3rd baby was 4lbs born at 34.5weeks and spend 3weeks in neonats. my midwife never picked up on anything wrong even through i had all the signs. i dont blame her she was awesome. one night i just couldnt breathe and had a pain in my chest with each breath up at a&e they couldnt fine anything wrong utlra sound,baby was fine. i was sent home with 2day follow up apt and as i entered the hospital EVERYTHING shut down, liver,kidneys heart rate drop. we both came within hours of dying. i would love more info before making the HUGE choice to have another

Caroline - posted on 08/24/2011

Hi Brittany, not sure what you decided. Your post was a while ago. I had my little boy 3 years ago with HELLP syndrome. He was 4 lb at 33 weeks born by emergency c section. I was extremely sick and he was fine. I had super high blood pressure, pritein in the urine, extreme swelling, severly reduced platelet count and poor kidney and liver function. With 4 weeks of flu on top of all that. We held off deciding to have number 2 until I was ready to think about it. My on said chances of HELLP are low if the father is the same in a second pregnancy. Our daughter was born 4 months ago at 38 weeks, 6 lb 15 oz and is super healthy. I had a very easy pregnancy with mild hypertension starting early on, and controlled by medication from 20 weeks. I went off it when she was born. Good luck with your decision.

Brittany - posted on 09/24/2010

Hi, my name is Brittany, I am very new 2 the Circle of Moms. I also developed HELLP syndrome in my 1st pregnancy. They also told me it was a 50/50 chance that this could happen to me again in future pregnancies. Actually I cannot say when exactly I developed HELLP because my pregnancy was very rough to begin with, but I started having problems with my blood pressure & swelling. I had done two 24 hour urine tests within a 3 week period & both came out negative. During my 33rd week I developed a pain in the upper right side of my abdomen which was later diagnosed as my liver swelling up. My doctor admitted me for overnight observation (& another 24 hour urine test), only this time I came back positive for pre-eclampsia. They started to enduce my labor right away! By the time my baby Jasmine was ready to come, I was pretty bad! They say ur platelet count is like 100 thousand... well mine had dropped to 12 thousand! I was in labor for 3 days when Jasmine finally arrived! She was 3 lbs 15oz! She was so healthy, & never once did she have a problem the whole time I was going through hell! Lol! But she did stay in the NICU for 12 days. I am scared of HELLP syndrome recurrence... if there is anyone out there who can help me to better understand this condition please let me know. I want another baby so bad, but Im scared of going through the same ordeal again!

Amy - posted on 08/21/2009

I developed gestational hypertension at 27 weeks and was put on complete bed rest. At 29 weeks I was admitted to the hospital for hypertension and pre-eclampsia. After three days in the hospital Corbyn was born via emergency c-section at 3:30am. He weighed 4 pounds and 4 ounces...a good size for a preemie. Corbyn spent 15 days in the NICU and I spent a total of 8 days in the hospital. My liver and kidneys would have shut down within a couple of hours if he wasn't delivered. Everything happened so quick! Now I am happy to report that Corbyn is a happy and healthy 20 pound 8 month old!



I too am curious about another pregnancy and the chances of HELLP syndrome recurrence...

Julia - posted on 06/17/2009

Hi!

I had my daughter by crash section at 30weeks due to HELLP. It was thought to be standard pre-eclampsia until 24 minutes before my little girl was born.

Apparently I had been suffering from the condition since around 20 weeks as it is around that time that I stopped feeding her properly. She was born at just 1lb 7oz and spent 7 weeks in NICU but she amazed everybody and gained strength daily. I was not so lucky though. I was in intensive care for 4 days and then kept in for a further 9 weeks. We needed fertility treatment to conceive and I was told that I would need further treatment if we wanted more kids.

So, imagine my supprise when we found out we were expecting twins.

The fear of HELLP syndrome recurrence and going through all that again was just unbearable but we were promised constant care and monitoring throughout. We were warned that the chances of HELLP syndrome recureence was significantly higher due to my history and the fact that we were having twins.

We were also told that if I was to get it again it is almost always less severe than the first time.

So far there have been no signs of it re-occuring and I feel totally blessed to be having more kids. If I had let the worries get to me too much I would have probably regretted never having more.

It is worth the chance.

I hope you don't let this horrible condition put you off and rest assured that you will extremely well monitored this time around.

I hope this helps. x

Jen - posted on 04/08/2009

I developed HELLP with my first son at 37 weeks. Thankfully very late. I had my 2nd son 7 months ago and had ABSOLUTELY NO COMPLICATIONS!!! I can't imagine life without my 2 boys.

Amy - posted on 01/30/2009

Hello! I developed HELLP at 27 weeks. The pain started Christmas Day, so I thought it was just all the rich foods upsetting the pregnant tummy. HELLP was diagnoses at a routine office visit at 28 weeks. We both survived, barely. I don't have any long term effects, but my son is dealing with some routine preemie issues.



I think this is the biggest question on all of our minds. I always wanted more than one child, but do I dare risk it again? Is it fair to my son to go knowingly into a high risk pregancy? Who will take care of him if I'm on bedrest, or worse?



The HELLP Syndrome Society recently merged with the Pre-eclampsia Foundation. The foundation has a Medical Advisory Board comprised of experts, two of which specialize in HELLP. Here is one of the experts' answers to this question posted in their web site forums:



"Our experience in Mississippi, published approximately 10 years ago by Chris Sullivan and our team in the American Journal of Obstetrics and Gynecology, and recently corroborated in another center (SGI abstract) with similar numbers, is that the recurrence rate for HELLP syndrome is approximately one in four to one in five. The overall recurrence rate of any form of preeclampsia including HELLP was 40% in our experience. Lower numbers were derived by Sibai while in Memphis. Recent work by others investigating patients with acute fatty liver of pregnancy and atypical preeclampsia as HELLP syndrome suggests that there may be a genetic basis to these conditions involving long chain fatty acid synthesis. Whether or not a patient develops these conditions may depend on a number of factors, especially the interaction between fetal cells and the mother's tissues. There have been no studies to investigate how to reduce the risk of recurrence, but excellent nutrition seems reasonable as well as fairly close surveillance of a subsequent pregnancy by the OBGYN or MFM (baseline CBC, liver functions, repeats later in pregnancy if there is a question). Attention to self-monitoring by the patient in the second half of pregnancy is probably a good idea with regard to notifying her physician if she begins to notice a flu-like syndrome, develop GI problems, has nausea and/or vomiting, or experiences epigastric pain. In my experience, starting steroids early in the disease progression of HELLP syndrome improves the disease state and results in better maternal and perinatal outcomes. Of course, it is true that the majority of patients that had HELLP syndrome do not have a recurrence in the next pregnancy."



Here is a list of the Medical Board and their credentials: http://www.preeclampsia.org/Mboard.asp.



It is certainly not an easy decision.

Amy, Ohio

Kerri - posted on 01/23/2009

I was also wondering the very same thing.  In the group that I'm in on Cafemom.com, there are several who have gone on to have more children, some with and some without HELLP.  Some of their doctors had no answers, a few had to take baby aspirin and shots of some sort, and others were just monitored closely.  My doctor said that he's monitor me closely, but I just don't know.  I'm kind of scared.

I developed HELLP early in my third trimester, symptoms like the liver distention pain, tingling, feeling terrible, small amount of protein in my urine, but not high blood pressure.  My symptoms persisted, but never were so bad as to put me in the hospital.  We didn't officially "catch" it until my platelets were too low during labor (40 weeks along thankfully), and they wouldn't give me an epidural.  After more blood tests, my doc  figured it out and then I had the emergency c-section.  I have a  healthy boy who turned a year old today, also not affected by the HELLP.  I feel very thankful for that. 

But my husband and I were talking about maybe having another baby, and we don't really know what to do because of the possibility HELLP syndrome reoccurring.  I guess I'll have to quiz my doctor again.

Cara - posted on 01/20/2009

I am wondering the same about HELLP syndrome recurrence.  I was told that the chance of developing it a second time would be about as much as the first???   Anytime I have asked my doctor theres no real answer???

I developed it at 30 weeks and had an emergency c section at 31 weeks....Ava was born 3 pounds 8 ounce and is 2 and a half now and is doing really well. 

Brittany - posted on 09/24/2010

Hi, my name is Brittany, I am very new 2 the Circle of Moms. I also developed HELLP syndrome in my 1st pregnancy. They also told me it was a 50/50 chance that this could happen to me again in future pregnancies. Actually I cannot say when exactly I developed HELLP because my pregnancy was very rough to begin with, but I started having problems with my blood pressure & swelling. I had done two 24 hour urine tests within a 3 week period & both came out negative. During my 33rd week I developed a pain in the upper right side of my abdomen which was later diagnosed as my liver swelling up. My doctor admitted me for overnight observation (& another 24 hour urine test), only this time I came back positive for pre-eclampsia. They started to enduce my labor right away! By the time my baby Jasmine was ready to come, I was pretty bad! They say ur platelet count is like 100 thousand... well mine had dropped to 12 thousand! I was in labor for 3 days when Jasmine finally arrived! She was 3 lbs 15oz! She was so healthy, & never once did she have a problem the whole time I was going through hell! Lol! But she did stay in the NICU for 12 days. I am scared of HELLP syndrome recurrence... if there is anyone out there who can help me to better understand this condition please let me know. I want another baby so bad, but Im scared of going through the same ordeal again!

Amy - posted on 08/21/2009

I developed gestational hypertension at 27 weeks and was put on complete bed rest. At 29 weeks I was admitted to the hospital for hypertension and pre-eclampsia. After three days in the hospital Corbyn was born via emergency c-section at 3:30am. He weighed 4 pounds and 4 ounces...a good size for a preemie. Corbyn spent 15 days in the NICU and I spent a total of 8 days in the hospital. My liver and kidneys would have shut down within a couple of hours if he wasn't delivered. Everything happened so quick! Now I am happy to report that Corbyn is a happy and healthy 20 pound 8 month old!



I too am curious about another pregnancy and the chances of HELLP syndrome recurrence...

Julia - posted on 06/17/2009

Hi!

I had my daughter by crash section at 30weeks due to HELLP. It was thought to be standard pre-eclampsia until 24 minutes before my little girl was born.

Apparently I had been suffering from the condition since around 20 weeks as it is around that time that I stopped feeding her properly. She was born at just 1lb 7oz and spent 7 weeks in NICU but she amazed everybody and gained strength daily. I was not so lucky though. I was in intensive care for 4 days and then kept in for a further 9 weeks. We needed fertility treatment to conceive and I was told that I would need further treatment if we wanted more kids.

So, imagine my supprise when we found out we were expecting twins.

The fear of HELLP syndrome recurrence and going through all that again was just unbearable but we were promised constant care and monitoring throughout. We were warned that the chances of HELLP syndrome recureence was significantly higher due to my history and the fact that we were having twins.

We were also told that if I was to get it again it is almost always less severe than the first time.

So far there have been no signs of it re-occuring and I feel totally blessed to be having more kids. If I had let the worries get to me too much I would have probably regretted never having more.

It is worth the chance.

I hope you don't let this horrible condition put you off and rest assured that you will extremely well monitored this time around.

I hope this helps. x

Kerri - posted on 01/23/2009

I was also wondering the very same thing.  In the group that I'm in on Cafemom.com, there are several who have gone on to have more children, some with and some without HELLP.  Some of their doctors had no answers, a few had to take baby aspirin and shots of some sort, and others were just monitored closely.  My doctor said that he's monitor me closely, but I just don't know.  I'm kind of scared.

I developed HELLP early in my third trimester, symptoms like the liver distention pain, tingling, feeling terrible, small amount of protein in my urine, but not high blood pressure.  My symptoms persisted, but never were so bad as to put me in the hospital.  We didn't officially "catch" it until my platelets were too low during labor (40 weeks along thankfully), and they wouldn't give me an epidural.  After more blood tests, my doc  figured it out and then I had the emergency c-section.  I have a  healthy boy who turned a year old today, also not affected by the HELLP.  I feel very thankful for that. 

But my husband and I were talking about maybe having another baby, and we don't really know what to do because of the possibility HELLP syndrome reoccurring.  I guess I'll have to quiz my doctor again.

Cara - posted on 01/20/2009

I am wondering the same about HELLP syndrome recurrence.  I was told that the chance of developing it a second time would be about as much as the first???   Anytime I have asked my doctor theres no real answer???

I developed it at 30 weeks and had an emergency c section at 31 weeks....Ava was born 3 pounds 8 ounce and is 2 and a half now and is doing really well.